A rant and Danish Radio attention on ticks

Hvorfor bliver læger ikke hængt ud når de bliver afsløret i at praktisere nonsens? Jeg fik sidste år at vide af Anders Koch fra Rigshospitalet at danske flåter ikke bærer co-infektioner, og at han ikke kendte til nogen 'flåtpakke' fra SSI. Nu kan man så læse på DR.dk at rickettsia er ligeså udbredt som borrelia, samt at flåtpakken er bestilt ca 2000 gange de sidste syv år. Hvordan har en ekspert på et centralt sygehus kunnet undgå at høre om flåtpakken? Og hvordan i al-******** har man ignoreret risikoen for co-infektioner? Der må jo for **** have været nogle symptomer? Hvor er journalisternes forargelse over hele denne rådne sag? Politikere bliver hængt ud, læger går fri. Nå, det er efter sigende giftigt at være vred. Jeg må hellere slappe af.

http://www.dr.dk/Nyheder/Regionale/Syd/2014/06/27/090544.htm

http://www.dr.dk/Nyheder/Regionale/Syd/2014/06/27/072706.htm

http://www.dr.dk/nyheder/regionale/syd/2014/06/27/125918.htm

EN: I might not translate this post, but the main takeaways from the articles is that there will be a borrelia research department in Odense and that Rickettsia is as widespread in Denmark as Borrelia according to new research that will be published later this summer. I will hopefully follow up on the research and on the research department. My rant is about how a Danish expert (!) claimed to me that Danish ticks don't have co-infections and that he had never heard of the 'tick-collection' of blood tests that can be ordered from the state serum institute. I am a bit agitated right now because SSI says the test collection has been ordered from them 2000 times over seven years. It means that an expert at one of the biggest hospitals in Denmark has missed the existence of something that is quite central to diagnostics. What an absolute disgrace! It should be all over the media (please contact me Danish media, and I will share my indignation with the people!)

The saddest thing is I am forced to pay that expert because he convinces every patient that they should not look for second opinions. His convinced ineptitude outcompetes any chance at alternative views because everyone respects him so much that they don't spend money elsewhere.

My mother is on 10 days of penicillin, pill form / Min mor tager 10 dages penicillin pt

My mother emailed me the other day, saying that she had found this year's first tick attached. Afterwards she had felt fever-like, and took her temperature to 39 degrees Celcius. She called the telephone doctor who told her to contact our family doctor who then gave her a receipt for 3*10 tablets. She started taking those and said she felt long-term symptoms lesser, mainly fatigue. I asked her to write me a status report, and I just received it. Notice that everything she mentions has persisted from before the recent tick-bite. She has been very exposed to ticks, in the same small area as earlier years. It would make sense if the same rodents or deer are regulars around that area, and that no significant load of new infections have moved into the area.

Here's her description:

"I'm feeling very clear-minded, well rested and fresher then before I took the penicillin. It has scratched a bit at the spot where the little black one sat, but the red spot has gotten smaller. I feel that I can overcome more than before, where I was heavy and tired in my arms for example, I am still a bit sore ther, in both arms, but nothing significant at all, probably because I'm sitting down writing. Now I can turn my head to the left also, without any pain! Prior to taking the penicillin, there were periods where I couldn't turn my head without pain. I also breathe without a feeling of having a stuffy nose. The issue with loose bowels also seems to be over, and I continue to drink A38 (means: yoghurt with added bacillus acidophilus, which we then both currently use), approximately 1-1.5 liters per day. At 10 PM I have to take a penicillin tablet again along with the A38. Then I have taken all three for today."

DA:
Min mor skrev at hun havde årets første flåtbid. Efterfølgende havde hun taget sin temperatur til over 39 grader. Hun fik en recept på ti dages penicillin som hun pt tager. Jeg bad hende skrive om effekten. Bemærk at de aftagende symptomer er fra før det aktuelle flåtbid. Altså kan der være tale om en langvarig, overset infektion, som nu bliver påvirket af antibiotikaen. Det foruroligende er, at hvis dette er tilfældet, så vil symptomerne formentlig vende tilbage efter 'kuren', hvis altså man skæver til tendenserne fra den praktiske erfaring fra klinikker overalt i verden.

"Jeg føler mig meget klar i hovedet, udsovet og udhvilet og mere frisk end før jeg tog penicellin. Det har kløet lidt på det sted hvor den lille sorte sad, men den røde knop er blevet mindre.  Jeg føler jeg kan overkomme mere end før, hvor jeg var tung og træt i bl.a. armene, der er jeg lidt øm endnu i begge arme, men slet ikke noget at tale om, vel fordi jeg sidder og skriver. Nu kan jeg dreje hovedet også til venstre uden det gør spor ondt!  før penicellinen var der perioder hvor jeg slet ikke kunne dreje hovedet uden det gjorde ondt.  Jeg trækker også vejret helt uden nogen følelse af at være ret stoppet i næsen. Og så er hurdlen med tynd mave v. afføring vist også overstået, og jeg fortsætter med at bælle A 38 i mig, sådan ca. 1 -1½ l.  i døgnet.  Kl. 22 skal jeg tage en penicellin tablet igen sammen med A 38.  Så har jeg taget alle tre i dag."

Observing rashes / At observere udslæt

The rash has special qualities. It's apparent to observers of a condition, and it's often specific to one single condition. Therefore the Erythma Migrans holds a special property and potential in not only diagnosis but also in research on Lyme disease. It's trivial that a rash means infection, but how about the case where there's a rash but the serological testing says that there is no infection? Should one trust the clinical presentation, or the serology? A rash could be shrugged off as a recent infection that has been defeated by the body. But what if the rash persists for months after a negative serological response? That's what happened to me.

At Bispebjerg Hospital in Copenhagen, I was told by a neurologist and an additional doctor that the combination of twitchy face and toes was highly indicative of infection (especially held against 6-months-earlier symptoms of summer fever with migraine and stiff neck after one identified tick bite, long developing erythma migrans and no medication because I ignorantly shrugged the risk of persistent illness off, even as I had a receipt for Doxycycline). A meeting was held on whether they should proceed to do a spinal tap. I waited in an acute emergency room, and they returned to say 'go' on the test. Hours later, when the results came back, a third neurologist entered the ward where I laid in wait for results, briefing me that the results said 'no infection', and then proceeded to give the following explanation for my symptoms: The twitches were just 'common stuff'. The rash was declared ringworm, with no closer inspection of its characteristics. Personally, I would call this step malpractice, but it follows logically from adhering to serological testing. Although you would have to accept an unreasonable string of coincidences for it to be true:

=> Tick bite
=> Random summer fever with random neck stiffness and migraine and nausea
=> Random distinctively flat ringworm rash developing slowly in size over five months without spreading to other body parts and absence of itching and absence of lightly protruding edges as is to be expected from ringworm rashes according to medical handbooks
=> Random neurological 'common twitches' to suddenly introduce themselves after lifetime of zero experience with such symptoms
=> ....

... And this is where it gets even weirder. For, as I was sent home, I continued to experience twitches more and more frequently over months, until some nights involved lightly shaking through my entire legs as I attempted to fall asleep. And what happened to the rash? It started to disappear spontaneously one day, clearing over a week or so. I had asked for a receipt for ringworm medicine but had not taken any from the tube that to this day remains full in my refrigerator. So the 'ringworm' just cleared with no medication. I have yet to consult a dermatologist on whether this miracle is common among 'ringworm'-patients ...

... So to the list of randomly coinciding occurrences, we should add ...

=> twitches intensifying over several months
=> spontaneous clearing of ringworm-infection

And the cherry on top, here are some pictures of weird skin rashes on my buttocks and around my hips. They have been there at least one year, and I thought of them as stretch marks. But all this weird stuff that's happening with me, it makes me think they should be investigated by a professional, just to know precisely what caused it.

My plan is to visit a dermatologist and ask what they are, and also whether 'ringworm' can clear spontaneously by itself, and be flat.

I've lost the ability to sweat / Jeg har mistet evnen til at svede

A few days ago, I noticed that I felt very warm. I worried that I might have caught a fever, so I took the temperature. It was a 'safe' 37,4c so I scrapped the thought and put responsibility on a high room temperature (the weather outside is GREAT these days, summer has come to town!). Then some time passed and I noticed that I didn't sweat. It felt bizarre to be so warm and yet completely dry. I'm not kidding you, I went and googled "can't sweat lyme" right away, to see if anyone with lyme disease had the same problem. You know, it's my quick'n'fun little standard reaction to bizarre body malfunctions. I found a thread about a few people with the same issue. They mentioned the thyroid as an involved cause, but I'm too unfocused to properly look into that. It's been at least a few days of feeling very hot with no sweat at all. My arm pits are dry as knees. It feels bizarre, that's my best word for it. There's a page on mayoclinic.com about the condition, and it lists progressive neurological damage as a cause, along with some other much less likely causes. It looks pretty bleak when put like that. "Progressive". I know, that's bacteria/autoimmune damage in a box, but I like to think that, as the doctor would say, I'm just stressed/anxious and that's it. By now, with the alternative of long-term IV antibiotics, I almost would prefer to live in a bubble of ignorance. Despite my total lack of stress or anxiety, haha. But ignorance can be my powerful weapon for inner peace, it feels important right now.

http://www.mayoclinic.org/diseases-conditions/anhidrosis/basics/causes/con-20033498

In Danish (with an added rant):

Beklager manglen på oversættelser. Jeg gider knapt nok, fordi google translate sikkert kan gøre et tilstrækkeligt job, og fordi jeg tvivler på at jeg har nogen kun-dansktalende læsere. Men kort sagt stoppede jeg forleden med at svede. Det virkede som feber, for varmen var det første jeg lagde mærke til. Men efter lidt tid bemærkede jeg det totale fravær af fugt på min hud. Jeg er tør som en hytte under armene, og det virker bizart. Jeg fandt en forum-tråd med andre som også har symptomet sammen med andre lyme-symptomer, hvori de nævnte skjoldbruskkirtlen som involveret. Jeg har dog ikke fokuset til at gå i dybden med det. Jeg fandt også en side på mayoclinic.org om udeblivelsen af sved. Den nævner nervesygdomme samt hudsygdomme (hvoraf jeg ikke har nogen hudsygdomme). Jeg har lyst til at besøge en infektionsmedicin-overlæge i løbet af sommeren, bare for at vise at jeg ikke forsvinder ud af systemet gratis, og for at se det overraskede ansigt. Jeg er i øvrigt afslappet og frisk mentalt, så alt det her skyldes under ingen omstændigheder stress. Jeg har en kæmpe buffer i banken og har været min egen afslappede chef i årevis, så jeg er nok Danmarks mest afstressede unge mand. De kommer ikke udenom det flåtbid i opklaringen af min pludselige fremadskridende sygdom.

Det er absurd at erythma migrans-mærket pludselig blev kaldt ringorm, bare fordi ELISA-testen kom tilbage negativt, især når den ifølge Columbia University er mindre end 80% pålidelig. Det betyder jo at hver femte der kommer ind med et fuldstændig spot-on klinisk borrelia-billede pludselig bliver stress-ringorm-syg bare fordi testen tager systematisk fejl. Det er grotesk at systemet ikke tager højde for den systematiske usikkerhed, man kunne f.eks. lade et fast antal 'negativ-testede' patienter blive anset som inficerede i overensstemmelse med upålideligheden i testen.

The Establishment, The Understandable and The Inexcusable

The Understandable:

Long-term antibiotics have not sufficiently been documented for effectiveness in double-blind studies. Thus, such treatment is considered experimental and risky.

The Inexcusable:

The ELISA test is less than 80% precise by a fair margin. Despite the certain mass of people who will be falsely tested negative, there are no procedures for picking up those in the health-care system. They officially have no infection, but there's a statistical, mathematical certainty that at least some still have the infection. In Denmark, about 50.000 people get infected yearly. If a similar number take the ELISA test, it's fair to predict at least 1000 false negatives yearly. In that order of magnitude, people will be left to their own families for support and might never take responsibility for the infection (anti-inflammatory diet, rest, stress-free life) because they are told they are now 'safe', after the negative result. They are the ones left to true experiment and risk.

I respect experts a lot. They do their best. But uncertainty must be recognized, unless we disregard the consequences for those caught on the wrong side of results.

Ear Doctor's perspective

Today I went to check my hearing and ears. The doctor removed some black, hardened ear wax from really far inside my ear. I told him about hearing my heartbeat while I had the test headphones on, the gushing sound was louder than the programmed beeps. I told him that I some nights have felt my blood pressure in my fingers and toes.

He was surprised the wax could be so close to my ear drum, and that it was so hardened. His answer to the blood pressure issue was to get it checked and that he also "sometimes felt it in his thumb, if he pressed it against a table". In response to the heartbeat-sounds, he answered that I should pay less attention, that it could feel intensified by attention alone.

I don't buy that bullshit by the way. But he's hurried, and he has no data on the wider system that my body is. His attention was on the noise, not mine.

For the record, his tools caused bleeding in my right ear. It would be ironic if that causes an infection. I highly doubt it was sterile. Not expecting it, but I record it since I want to be able to shove people's incompetence back into their face if it has consequences for me. Remember to always document things. Any possible cause of something, document it, and you will be the smart one. I took a picture of some bloody paper as I returned home. 

Symptom update

Jeg vågnede tre-fire gange i nat fordi lyden af pumpende blod i mit højre øre var høj. Under sådan et 'anfald' kan man med en hånd tydeligt mærke blodet pumpe bag øret, nede mod nakken, og det er ubehageligt at tænke om det belaster årerne, for det lyder/mærkes som en slags prop. Især når man prøver at sove.

Oveni købet kom en temmelig kraftig nerveforstyrrelse til, i min venstre fods tæer. Dette er specielt af tre grunde:

1) Jeg har kun haft så markant forstyrrelse i tæer et par gange siden biddet i 2012. Det plejer at være små "spændinger", men her føltes det som at få stød.

2) Jeg plejer at blive "forstyrret" i højre side af kroppen, men her var det altså venstre fod.

3) I går spiste jeg et produkt indeholdende rørsukker, der var lige lovligt sødt, og jeg forventede udfra tidligere erfaringer, at det hurtige sukker kunne give problemer.

Jeg skifter døgnrytme jævnligt for tiden, for jeg kan ikke falde i søvn pga pumpelydene, og jeg er helt smadret uden 10 timers søvn. Så døgnet bevæger sig to timer fremad på nogle dage.

Nåmen, derudover har jeg haft lidt ømhed i benene. Og en forstyrrelse der kunne bekymre mig meget (hvis ikke jeg gjorde alt for at slappe af): Uresponsive hals-muskler, der sætter sig fast i spændt tilstand i nogle sekunder, når jeg kigger skarpt ned mod højre side. Det er kun sket et par gange, men jeg betragter det som en 'fremadskriden' i forhold til fascikulationer/muskelryk. 

Det har været ubeskriveligt fedt at være uden symptomer i en periode på ca 40 dage (fra slutningen af januar til starten af marts). Jeg følte mig rask.

EN: Leg pain gone DA: Bensmerter er væk

EN: Since yesterday (17/1) my leg pains disappeared. It is SUPER nice. I now have twitches randomly around my body, and I woke last night from twitches in my toes. Also, a few black spots reappeared on my vision, after I carefully checked for them once every week for a few months and there were none.

DA: Siden i går har mine bensmerter været væk. Det er MEGA rart. Jeg har nu muskelryk rundt omkring i kroppen, og i nat vågnede jeg ved trækninger i mine tæer. Pletter på synet er vendt tilbage, efter jeg i et par måneder ca ugentligt har tjekket at de var væk.